Relationship Challenges in Behavioural-Variant Frontotemporal Dementia
Research type
Research Study
Full title
Exploring Relationship Continuity in the Context of Behavioural-Variant Frontotemporal Dementia
IRAS ID
320234
Contact name
Stephanie Howarth
Contact email
Sponsor organisation
University of Birmingham
Duration of Study in the UK
1 years, 6 months, 30 days
Research summary
Research Summary:
The overall aim of this qualitative study is to understand the impact of challenging behaviours and personality characteristics on the spousal/partner relationship in the context of Behavioural-Variant Frontotemporal Dementia (bvFTD). Due to the effected brain regions, people who are diagnosed with this disease experience significant changes in their personality and behaviours which may be very distinct from their pre-morbid presentation. This can cause substantial difficulties within their closest relationships, especially with spouses/partners who are likely to take on a caring role.
Six-fifteen spouses/partners of individuals with a diagnosis of bvFTD will be recruited from either Community Mental Health Teams supporting the affected spouse or online via Join Dementia Research or the Alzheimer’s Society ‘Talking Point’ forum. Individuals will be interviewed for approximately 45-90 minutes using a semi-structured interview schedule informed by the research questions and literature on the concept of relationship continuity. Respectively, relationship continuity or discontinuity are the experience of a relationship as remaining largely the same or as radically different by the unaffected spouse/partner (Riley et. al., 2013). Interviews will be transcribed and analysed in line with Braun & Clarke’s (2021) six-stages for Reflexive Thematic Analysis. Participants will be given several options for interview location including in-person either at an identified NHS site or in their own home or, via a video-conferencing platform.
Carer health and wellbeing is vitally important so it is hoped that by speaking with spouses/partners about their experiences, we can identify the best way to support their wellbeing in the face of inevitable challenges caring for a loved one with bvFTD.
Lay Summary of Study Results:
According to new research from the University of Birmingham, behavioural and personality changes arising from a rare form of dementia can put relationships under significant strain.
Researchers from the Centre for Applied Psychology have explored the impact of symptoms of behavioural variant frontotemporal dementia (bvFTD) on the spousal relationship. bvFTD causes individuals to experience significant changes to how they behave and interact with others. Most notably, individuals will experience significant changes in their social and emotional skills, such as making inappropriate comments to others, showing aggression, and being unable to read and respond to the emotions of others. Amongst this, individuals are unaware of their condition however, their memory and self-care skills are unaffected.
This study focussed on how these symptoms can threaten the spousal relationship, and how spouses may respond to these changes. Ten spouses whose partner had a diagnosis of bvFTD were interviewed about their experiences. The interviews focussed on asking spouses about the changes in their partner, what their emotional responses to these changes was, how they made sense of these changes, and how these changes affected their relationships.
The results highlighted that spouses can become fearful of and anxious when spending time with their partner, which impacted their ability to feel relaxed in their company. Spouses also struggled to feel positively towards their partner as they experienced strong, negative emotional responses to their partners behaviour, particularly in extreme circumstances such as aggression, violence, and an unpredictable temperament. Communication became strained between couples as spouses found their partners to be unresponsive to their emotional state. The significant and incomprehensible change in their partner led most spouses to view them as a fundamentally different person, which made it difficult for spouses to retain their previously held feelings towards their partner. Spouses struggled to feel as though they were in a husband-wife relationship as their partners no longer showed affection or care towards them.
In contrast, some spouses were able to maintain positive feelings towards their partner despite experiencing these difficulties. These spouses spoke about the importance of the expression of love and their perceived need to protect their partner as being valuable drivers in their ability to cope with their situation and the changes in their partner. These spouses also held in mind the influence of dementia on their partners behaviour, whereas the spouses that struggled most, often questioned whether their partner meant to cause them hurt and whether they were in control of their behaviour.
Lead researcher, Rhea Asfaw, explains the implications of the findings from this study: “Despite its rarity, bvFTD is a particularly devastating condition in that it has the potential to seriously damage relationships. This research has provided important insights into the experience of spouses in this difficult and unusual context. It was clear that having positive and meaningful interactions with their partner was severely compromised, thus contributing to a loss of connection between couples. It is important that research continues to explore the potential for targeted interventions for these spouses, in order to support them in adjusting to these difficult changes in their partners.”REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
23/YH/0073
Date of REC Opinion
27 Apr 2023
REC opinion
Further Information Favourable Opinion